Sunday, June 12, 2022

Monday, October 8, 2018

Finding Peace While Fighting Lyme

The past months have been one wild roller coaster ride. I thought I knew about Lyme after all we went through with Kiana during the last two years, but I came to find out that I had no clue, none. I didn't know how horrible the human body can feel, how rotten from the inside out. Kiana was unable to tell me how she felt beyond complaining that her head hurts or her stomach doesn't feel well. She would roll and toss on her bed, throw her body against the wall, and scream. I didn't know how to help her, and if I am honest, there were times when I felt she was being overly dramatic. I don't think that anymore, in fact, I now wonder how she kept going with how terrible she must have felt.

 Lyme has a way of putting blinders about your eye's and brain, so you can only see and focus on yourself not a good thing for a mom. I have been spending my days on the sofa, pounding Heavens Gate's pleading for answer's and  struggling to find joy and purpose in life. When I emailed a friend telling her my woes, she said, "You sound as if Pharoah's army is behind you and the Red Sea is before you! That was a pretty apt description of the terror and emotional overload that Lyme is known to inflict on those with the disease. Lyme, coupled with teaching and parenting traumatized children, was pushing me under and I felt like my prayers weren't being heard. Home schooling was/is my biggest struggle and everywhere I turned I was met with another solid wall.

Then last night Kiana came to me and said she needs to talk. This in and of itself is a huge improvement. Maybe the oft repeated message, "Use your words!" Is finally sinking in! Getting off the sofa and walking back to her room required a huge amount of energy on my part, but the poor girl has only had a shadow of a mom here of late, so I mustered up the energy to follow her. She has had some traumatic experiences in life and while some counselling would be helpful, with her it is never that easy. Anyway, she said, "Mom, sometimes I think God doesn't even care about me anymore. He keeps letting me get hurt and I am not like everyone else and it just isn't fair!" 

I had to smile to myself because I had just been having a similar discussion with God. I knew I was being irrational, but I couldn't seem to help myself, now I had my daughter looking to me for answers and I knew I couldn't just give her a glossed over reply because she really wanted help. This is what I told her, "Kiana, mom has been struggling with the same feelings. I feel like God doesn't hear me either, things just don't get better and I feel like giving up. I know exactly how you feel." We talked about sin and how God gives everyone a free will, which means people will make bad choice's, we will get hurt and bad things will happen. We will lose loved one's, our health, our friends, and there will be times when life doesn't seem worth living. I explained that Satan wants her to feel discouraged, he wants me to feel discouraged, and if we let ourselves think that God doesn't care Satan is getting the upper hand. She connected with that thought and we talked about ways we can help ourselves climb, and stay, out of the rut of discouragement even when our brain's and body's feel sick. 

When Kiana jumped over to the Lego house she had built and began showing me her newest creation I knew the crisis was over, but it wasn't only Kiana that was feeling better, I was too! Somehow having to verbalize all that, having to put my self pity aside and come up with biblical answers to her questions, made me realize just how far down the wrong trail I myself had gone. 

I saw a quote recently that said: 

"We are too prone to engrave our trials in marble, and write our blessings in sand."
                        C.H. Spurgeon

I was quite challenged by that quote because in reality, God has worked many miracle's in the past year, but instead of focusing on them I am so prone to focus on the day to day struggle of putting one foot in front of the other. So as I sit, I will count my blessings, rather than fret about the, "What if's."

Wednesday, September 19, 2018

A Bid For Freedom - When Mom And Dad Become Complacent

Joseph has a way of throwing us for a loop whenever we become too complacent about enforcing rules and boundaries. We have multiple supports in place to ensure his safety, and our sanity, and when we remember to implement those supports we don;t have as many melt downs. The trouble is, there are umpteen things to remember. Things like, sensory issue's, dysmaturity, trauma trigger's, and the list goes on. To complicate things even further, there are times when certain supports aren't needed and we forget about implementing them, until something happens and we suddenly realize we haven't been doing _______ for awhile.

One of Joseph's supports is his door alarm, a simple magnetic door alarm that Dean fastened to the top of his bed room door. We have a remote in the hallway that rings loud enough to catch our attention anywhere in the house. We installed the alarm when Joseph began wandering the house at night and eating whatever struck his fancy. As his brain doesn't tell him when he has had enough to eat, we quickly ran into problems. We put the alarm on his door and didn't say much about it. He assumed it was placed there to keep bad guys out of his room and no, we didn't plant that idea in his mind he came up with it on his own.

At first we faithfully made sure the alarm was plugged in and in working order, but eventually as he was no longer testing his alarm to be sure it was working, we got sloppy. Then we would find an empty food bag, a stash of wrappers behind his bed or stuffed into a hole in his wall, and we knew we had better keep an eye on that alarm again.

The other night, something woke me out of a sound sleep. I still don't know what it was, but I suspect it was Joseph's bedroom door squeaking as he cracked it open to check if the alarm was working. A few seconds later his alarm went and I assumed he was coming to tell me that he wasn't feeling well. He has been dealing with some health issue's and I told him he must come get me when he doesn't feel well. When he didn't come to our room, I decided I had better go check on things. I went to look what was going on and found him lying on his bed, hugging his stuffed puppy, Sport, and looking ever so guilty. After questioning him, he said, "I wasn't tired so I was going to look for free tractors." He has a fascination for tractors and recently found a tractor magazine he spends hours poring over. Since I was tired, I decided to accept his explanation and go to bed.

The next day Dean and I asked him a few more questions, and found out that this wasn't the first time he was out of his room in recent days. One of Joseph's chores is too sweep the hallway, making it easy for him to loosen the alarm, then all he had to do was unplug it on his way to bed at night. Turns out that the other night he sneaked out of his room, crept down the basement stairs and crawled out the window. He chose the window because he didn't want us to hear the outside door squeak, he then went to the shop and rode his bike for awhile before coming back to bed...and we were none the wiser. This folks, is why parenting a child with FASD is so challenging - you never know what they will do! At first we were a bit skeptical about his story, but he stuck to it and the details never changed, so we had to conclude he really had gone out and ridden his bike, while we slept totally unaware. Doesn't give one a very good feeling to know your 10 year old can get out of the house  at night without your knowing it! My mind made a few frantic loops, thinking of all the things that could have happened...he was in the shop, a place he is not allowed to be without supervision due to all the tools. He could have brought anything back into the house with him and done all kinds of damage, he could have wandered off into the woods, he could have hurt himself and we wouldn't have known he needs help...Thankfully he simply went for a bike ride and made it safely back to bed!

Monday, September 17, 2018

Willfulness Or Brain Damage?

Having a child with FASD makes maneuvering sibling relationships challenging. We are trying to teach our children that  Joseph's behaviors, which bug them to no end, are due to brain damage not a fixed desire to irritate his siblings. Sometimes I wish they would simply show him a little more grace, that would make being the mom would be so much easier! But then I remind myself of how often I fall short of responding with patience and understanding, after one too many challenging interactions with him.

After an exceptionally challenging day, Dean said, "I think Joseph tries to be kind and respectful, but he falls so far short of it that it is difficult keep in mind that this is brain damage, not will full behavior."

I KNOW it is brain damage and I KNOW he can't help it, but when a child's behavior drains a family of their emotional energy, it is hard to remember that. Sometimes I totally forget and when I begin seeing his behavior as will fill, bad things happen.

First, whether I like it or not, Joseph regulates off of me. He relies on me to maintain his equilibrium and when I am irritated (even silently irritated), with him he falls apart and tries to regain my favor by doing things for me.  Anyone who has a child with FASD will know that these children often struggle to anticipate their own needs, much less someone else's. Having to exert brain power to meet another's needs, means they have that much less to use on themselves which means more accidents, more messes, more tears... all in the name of trying to regain my favor. So who is at fault here?

Joseph adds his three cents worth to every conversation, unless we specifically tell him, "No more talking!" Then he sits and sulks because, "You never let me talk!!!" Which of course isn't true. After he has butted in and made multiple comments which may or may not have had anything to do with the subject being discussed, it is easy to become frustrated. To complicate matters, the more stressed he is, the more he talks. So if he senses that we are getting upset with his ceaseless chatter, guess what he does? You guessed it, he talks even more. I need to remember this is impulsiveness and/or dysregulation, not will full behavior, but it is so hard to remember when it happens so often. 

He will do whatever anyone tells him too (unless it is in regards to chores). If I send him on an errand, and Lia stops him and tells him to do something else, he will drop what he is doing and do her bidding. I will find him wandering around in another part of the house and ask him what he is doing, his reply, "_________ asked me to help fix this toy so I went to the basement to get the things I need." Never mind the rule that I need to see him at all times, never mind that I told him to come right back....everything goes out the window when someone asks him to do something. Yes, we are working on his siblings in this area as well, because they know they are not to be telling/asking him to do things without permission. Confronting him does no good. Yes he knows what he is supposed to do. Yes, he knows that he is not to run off and do things without permission, but in his mind he isn't in the wrong because ________ told him too and he was only trying to help. I need to remember that he has a kind heart and isn't trying to be disobedient. 

All this sounds so simple. Remember this is brain damage, and the child cannot help it...until you take into consideration the fact that he does have the ability to misbehave intentionally. And when that happens, if you do not give a consequence, his negative behaviors will increase tenfold. For some reason, he seems to think that if mom and dad slack off and give him an inch of leeway, they won't mind if he takes a mile of freedom. For this reason we have to consistently enforce our rules and boundaries, while taking in to consideration that he has brain damage and what appears will full, may be anything but and he will be crushed if we give consequences. If it is will full and we let it go, however, our problems are only beginning. 

For example, he has trouble regulating the quantity and appropriateness of his words when we are in the presence of others. For this reason, we have implemented a rule when in the presence of strangers, "Answer their questions, but then no more words." He is able to do amazingly well most times, with frequent reminders. The other day we had a visitor and I reminded him of the rules before she came in the door. He nodded (when he knows exactly what is expected of him, he can often relax and do well in situations that would typically increase his anxiety). He answered her questions appropriately, I smiled at him to reassure him he was doing well and then he sat and quietly listened to the conversation. Suddenly he piped up, "I drove over a kitten with the trike once and Tristan had to dig a hole and bury it!" I will leave you imagine the rest. 

Knowing Joseph's impulsivity, I was going to let the incident pass without further comment because we all make mistakes and it appeared that was all it had been. Except his behavior proved otherwise. After our visitor left, Dean talked with Joseph, explaining why we have rules and the necessity of obeying them. That chat cleared up the air and he went to bed happily. It is so hard to know when to hold him accountable and when to chalk it up to brain damage. 

*By the way, the cat story was due to confabulation... we did have kittens once upon a time, and I accidentally backed over one with the explorer, which was the end of poor kitty. He remembered bits n piece's and filled in the gaps with, what to him, was a plausible explanation.

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Saturday, September 8, 2018

Trauma - The Gift That Multiplies

Adoption agencies portray adoption as something joyful, something that fills a void in the hearts of parent and child, a blessing without end. What they fail to address is TRAUMA and while I understand why, I don't think it does anyone any favors to pretend that trauma isn't real.

For one, there is a desperate need for homes for the many hurting children in this world, why jeopardize their chance's of a loving home by informing prospective parents of the affects of trauma? 

Two, many people (including myself at one time) cannot fathom how a sweet, cuddly baby could be so affected by 9 months in the womb. Surely the love poured out upon this child, will overwhelm any residual affects of trauma. Or, if you adopt an older child, you think, "Surely he will be so glad to have all his needs met while in a safe loving family, that his past will fade from memory." 

Three, there are adoptee's who are doing well, those who are secure in their adoptive home's, those who are thriving and bettering the world around them, causing people to think, "It is obviously a matter of loving the fear out of the child combined with successful parenting," so they really wouldn't listen to the words of warning concerning trauma.

Then one day they wake up and realize:
- trauma doesn't just go away
- babies adopted at birth have trauma, sometimes so severe they are unable to bond with anyone.
- the child you adopted still yearns for his birth parents to love him and you, the adopted parent, can NEVER fill that void.
- you can pour love onto your child 24/7 but if he views you as the nurturing enemy, love will never fix the hurt he feels.
- the rage he feels towards the pain he experienced, whether real or imagined, has to be directed at someone and that someone is you. Sometimes it seems as though he delights in hurting you and your heart breaks, breaks, and breaks again until you wonder if it is even possible to find healing.

So you go seeking for advice which you will quickly find is available everywhere, even strangers will feel free to offer their thoughts when your school age child is having a meltdown in public. The second thing you will find is that the advice so freely given typically isn't what your child needs.

You know that punishing doesn't work, your child has already been through tougher things than anything you can dish out. 

Taking privileges doesn't work either, your child lives in the moment and he will be dreadfully upset with whatever you have taken away, but the next time he is faced with making a similar choice he won't stop and think, "Last time I did this ________ happened so I had better not." No, 9 times out of 10, he will repeat the same action.

Explaining why certain behaviors are inappropriate doesn't help for one simple reason, the child is acting this way due to trauma, and logic is useless in the face of trauma.

If you have a child with severe trauma, chances are no matter what you try regarding consequences will work, rather it will only serve to drive the child further away, because consequences only work if the child has the ability and desire to form relationships. You cannot punish a child without first having his heart and for many children, allowing an adult access to their heart is simply too risky because of one thing: TRAUMA.

You have to first connect with your child and that is one thing a traumatized child will fight against at all costs. Why? Because to them connection = pain. Why get close to someone only to have them leave? Why allow yourself to care about someone only to have that person run over your already broken and hurting heart? Why risk the pain? 

Then there are children who, due to their experiences prenatally or as a newborn, cannot bond without intense therapy. This may be because they either never had the chance to bond in the days and weeks after birth, so that part of their brain didn't grow correctly, or they endured such difficulties while in the womb; be it from drugs, alcohol, prescription medication, or maternal trauma, that their brain has been permanently damaged, making it extremely difficult if not impossible for them to bond.

Trauma is real folks, it is the gift that keeps on giving. Traumatized children can easily create traumatized families where chaos reigns. The hardest things about it is that there is no one cut and dried "cure" for trauma. A child who has been abused will need different therapy to heal than will the child who suffered prenatal exposure in the womb. What works for one child, may be the exact opposite of what a sibling may need. Trauma parenting is hard it may take years to see result's, there are days when you will want to throw up your hands in despair....days when you WILL throw up your hands or fall to the floor, but remember, your child needs you, even if he asks for it in the most unloving of ways. If there is one thing consistent about a traumatized child it is this: The child desperately needs his parents to be strong and his parents desperately need a village of support so they are not overwhelmed with the task before them.

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Thursday, September 6, 2018

Changing Ones Perspective - From Stressed To Blessed

Today was pretty awful, no change that, it was spectacularly awful. The girls were scrapping before they were even out of bed. Kiana has been dealing with some major anxiety since I got sick. She just knows I am going to die, so she has upped all her survival skills. Think lying, manipulating, pouring on the charm with people outside the family... All things that rear their ugly heads only when her past trauma comes knocking. She told Dean she is treating me so badly so it doesn't hurt as much when I die. Dean reminded her that no one who loses a loved one ever regrets the love and kindest they showed that person while they were still on earth. Last night we had a long chat with Kiana and I thought we had things cleared up. I should have known better, rationalization is not something the traumatized brain responds to.

After a chaotic breakfast we settled in to do our school work, and Joseph promptly flipped out over his math. He successfully completed third grade math last year, so I naively assumed he was ready to progress onto fourth grade. He wasn't, and math has been the source of many chaotic moments. Originally I blamed some of it on "summer brain," but in reality it is more than that. Due to FASD, he really needs to be in school year round to retain what he has learned. I cringe at the thought however, because I know full well how he would feel about that. Anyway, the first sign that something was wrong were the huff's n sighs coming from Joseph's corner of the kitchen table. Then he began verbalizing his displeasure and it went down hill from there. I realized his brain had gone too far down the FASD trail to do math, so I gave him another subject, something that sometimes works. He was having none of it though, because he wanted to do math, until I gave him the book, at which time he didn't want to do it. Books, pencils and words were sailing across the room, realizing I couldn't calm him, I put him in the shower fully clothed. For some reason, cold water will stop a meltdowns in it's tracks, he will go from screaming, kicking, hitting and throwing things, to smiling and telling us about his latest idea. Often he will stop mid scream, give us a big smile and that quickly the storm is over, except today it wasn't . Nothing helped so I put him in the pool where he swam several laps before calming down. Once back inside though, chaos resumed so I sent Dean a S.O.S. via text, essentially telling him we need professional help. He called me and suggested I put Joseph to bed with his stuffed puppy, Sport, and his weighted blanket. I did and peace ensued..... Until Kiana kicked up her heels.

Poor girl, in addition to her anxiety I am convinced her PANS is flaring again, or is it hormones?!? She melted down with a show that put Josephs meltdown to shame. Her high pitched shriek told me this wasn't just an, "I am upset with Mom," fit, it was brain inflammation. After trying all my tricks, none of which worked even the slightest bit, I took her out to the pool and had her swim laps. I texted Dean, "same pool, different rager." 

Joseph can't yell while swimming (the children can easily touch bottom, but it takes all his concentration to swim) big sister had no such problem, and the woods, and my poor ears, were ringing. I sat on the deck praying, asking God why? Why do my children have to suffer brain damage? Why do I have to home school? Why do they have to constantly face new threats to their security? At the same time I was thanking God that we live in a long drive and all our neighbors understand the circumstances surrounding the epic meltdowns that occur.

Eventually Kiana calmed down, we had lunch, Joseph was smiling again, and it was finally time for our quiet time. I sat down to sort through my feelings, read my Bible and pray because while the storms of the morning had calmed, they were still hovering on the horizon and I knew I needed to get myself grounded. I was helping Lia work through an issue when the dog started barking. A vehicle was parked in our drive. The driver had a stack of documents on the seat and he was clearly dressed up, funny what you notice when you are on high alert,  my first thought was, "Someone heard all the screaming and reported us!" Now who is being irrational?!? I quickly went over the things to remember even CPS comes knocking and typed up a text to Dean that read, "If I call you in the next moments answer ASAP!" Suddenly our answering machine picked up and I heard, "I am ______ from pest control, I am sitting in your drive, can you please get your dog?" I suddenly realized Kobi had been frantically barking all this time. I felt my heart stop it's frantic beating and all my frustration of the morning melted away. Suddenly, my overwhelming morning wasn't so overwhelming. The rages, hurtful words and actions no longer bothered me..... after all, CPS was not knocking at my door and in light of what I feared moments ago, I can handle whatever my little people dish out as they sort through trauma and deal with their limitations due to FASD. 

Perspective makes all the difference!!!

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Friday, August 31, 2018

When Mom's Brain Is MIA -Living With FASD

My blog posts have been few and far between these last months. I was dealing with health problems that had doctor's stumped. I reacted to medication's, spent days with no energy, and as the days and weeks wore on, felt a depression settle over me because no one could help me. As the days passed I was less and less in tune with the world around me... and the children felt it.

Having a mom who's brain was MIA, triggered trauma's that hadn't raised their head in a long time. Everyone know's that trauma can hinder a child's ability to self regulate, but it wasn't until I was floating adrift myself, that I realized how much my children rely on me. As much as I tried to appear strong and in control on the outside, I couldn't hide how torn up I was. For the past ten years, we have worked closely together to overcome the trauma that was doing it's best to undermine the foundation of trust we struggled to lay down and keep in place. That close interaction is absolutely necessary when healing from trauma, but it also means mom can't hide behind a fake smile. My children can read me like a book and even though I reassured them that I was okay, deep inside they knew I wasn't and it shook them to the core.

Old trauma's that I had forgotten about, came back with a vengeance. We had wet spot's on the sofa, eating, eating, and eating to drown the feelings of panic, meltdowns, the lying was through the roof and oh, the tears and manipulation! I pleaded with God for answer's to my health problems, if not for my sake, then for my children's. Dean and I carefully guard the foundation of trust that is being built between us and our children. The little bit of trust we have gained is so precious to us, that we go to great length's to preserve it. Knowing it only takes a few minute's to undermine that foundation,makes us all the more cautious. But here we were, weeks into this ordeal and losing out more each day. I was desperate!

How do you reassure a child who has personal experience with mom leaving? I have been here as mom for ten years, but that doesn't mean I will be here tomorrow. This child guards her heart closely, it was hurt once, and she won't risk having it hurt again. We have been making some progress, but having mom sick did a great deal of damage to the fragile trust that was beginning to form. Someone said, "How she loves you!" It is true she does, but deep underneath where no one but mom and dad could see, was FEAR! And it was driving her to try desperate measure's. 

How does a child who has zero self regulation keep from falling apart when his stabilizing force is no longer there? The answer is simple: he doesn't. Poor Joseph spent more time getting lost in our house, losing his possession's, getting into trouble and hurting himself than he has in a long time. It seemed as though his brain literally couldn't function when he was no longer grounded.

How does a child who is facing the real (to him)  fear of losing another mom react? He become's angry, he starts testing you, he pulls away emotionally. When mom is sick, it is very easy to pull away as well because who has the energy for this kind of drama when you aren't feeling well?

The coming weeks are going to be challenging because a lot of behaviors and attitude's were left slide. Fear gained a foot hold in my children's minds and it isn't going to be easy to send him packing. I would love to hear how you regroup when stability has been rocked, when attachment has been challenged, when fears that were laid to rest rise again. I have to be very careful because just as my children react to a lack of structure, too much "bonding" scares them just as badly.

Here is a quote that sums up how scattered one child felt: "Where am I? I went back and I was right, but now I can't find where I am." 

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